Table talk (Thoughts on talking to your young children about an upcoming Fontan procedure)

Life is pretty much the same at our house as it at any other. The girls are in school Monday through Thursday (still clinging on to that last day of the week with them, but it’s becoming increasingly more difficult with each career leap).

They go to school in our tiny village, and I pick them up around 5 o’clock each day and bring them home. Several nights during the week it’s just us girls-The Architect works in various corners of New England, depending upon the day.

I’m a stickler for eating dinner at the table, with no distraction of TV, phone or other handheld devices. (I will proudly admit that both girls eat pretty well, and I attribute this to my ‘old-fashioned’ regimen of dining at the table).

Two nights ago we were enjoying The Architect’s homemade chili with chips and shredded cheese-for the second night in a row-when Sienna out of the blue said, “Mommy, does Luna need to get a point this week”. I was startled at the child’s-who will be four later this month-astuteness to the topic. I had earlier that day received the call from the pharmacy informing us it was time to ship Luna’s Syngeris shot again. I had shoved the phone conversation to the deepest corner of the brain, not wanting to think about once again where we’ll find $2800 in cash for the shot.

But before I could think much more about it, Sienna continued with, “Luna has a special heart. Her heart is different from mine. That is why she needs so many points.” (Points, if you haven’t already figured out, is Sienna’s word for shot. I love her moniker so much that I don’t bother to correct her).

I decided this would be my chance to start to explain the year ahead.

“Luna will be going to the hospital later this year.” I say as casually as possible.

“But will she be home for bedtime?!” Sienna says,-her voice lifting into a whine-gives me an instant headache.

“Well, she’s going to stay there for a few nights; the doctors have to fix her heart a little more”.

All the while, Luna, sitting across the table from Sienna; is repeating everything we’re both saying, “Nanu stay at the hospital?” only her eyes are about the widest I’d seen.

The exchange lasted for all of five minutes before the girls went on to the topic of dessert. Later that evening, in the midst of changing them into their “cozies”, Sienna threw a temper tantrum-she said over her eyes “feeling tired”-but I wondered if it had to do with what we talked about earlier.

After they went to bed and the house was quiet enough for me to think, I realized the journey through this next heart surgery will be just as much about Sienna as it is Luna. Not only are the girls truly inseparable (even at school there stands just one wall between their class rooms-and I’m told they visit each other often); but from the smell of Purell hand sanitizer, to the beeping of monitors, and even the feel of the weight of a thousand emotions swirling around us; Luna’s experiences will be just as much a part of her older sister’s memories, as they will be her own.